Home care for late stage dementia, Part 1: Prepare for home care

Persons in late-stage dementia are almost totally dependent, confined to a wheel chair or a bed, and have serious memory problems and physical complications. In India, care for persons in this stage is usually done by family caregivers, and can be very challenging.

Dr. Soumya Hegde is a Bangalore-based Consultant Geriatric Psychiatrist. She has extensive experience in supporting people with dementia and their families through all stages — for persons living in full-time facilities as well as for persons being cared for at home by their families. Dr. Hegde completed her training in Geriatric Psychiatry in the UK. Her work experience includes seven years as Associate Director of the highly reputed full-time facility, Nightingales Centre for Ageing and Alzheimer’s (Bangalore). In this series of posts, Dr. Hegde discusses various aspects of home care for advanced dementia, and provides useful information and several practical suggestions.[note]

We begin this interview series by discussing how to organize the home and prepare for smoother care for someone with advanced dementia.

Questions/ Comments by Dementia Care Notes: Home care for someone with advanced dementia needs organizing so that we can do it smoothly and with less effort and stress. How should we set up the room where the person and the caregiver will spend most of their time?

Dr. Soumya Hegde (Consultant Geriatric Psychiatrist): Pick a suitable room with care if you have the option. Try to use a well-ventilated, well-lit, clean room where there is enough space to move around. A dingy room without fresh air or light can be very depressing for the person and for the caregiver. The room doesn’t have to be big, but it should feel open. Declutter the room. Many things the person needed earlier may not be needed now. Actually, you can start this clearing out of objects even before the person becomes bedridden. Remove things that can hurt the person or are unsafe.

Have enough comfortable space for the caregiver so that the caregiver feels happier and better while caring

Have enough comfortable space for the caregiver so that the caregiver feels happier and better while caring. And if you are using a paid caregiver, remember that a paid caregiver won’t stay if they are not comfortable.

A room with an attached bathroom is preferable if the person can use a bathroom. Make sure the bathroom is accessible by the person, even on a wheelchair. Add grab rails. You may need a commode chair.

One important thing to try for is a hospital bed so that the person can be raised and lowered easily. See if you can buy or hire a hospital bed that can be raised and lowered because that will make it more convenient for caregivers when they have to change diapers or give a bath or feed the person. Or at least get a bed-rest that you can use to make the person sit up. You’ll also need sheets for waterproofing under the bed-sheets. Think about getting a wheelchair if you can manage it.

Make a place for your care supplies and basins for water needed for cleaning, an air mattress, and various things like these. You can keep adding these objects as and when the need arises.

DCN: How can we organize and manage the care work so as to avoid exhaustion and burnout?

Dr. Hegde: When it comes down to managing a bedridden person, organization and management can really makes a difference, both for the family caregiver and the paid caregiver.

Being clear on what things you want done every day. For example, you want the person bathed and cleaned and fed. You want to do massaging and passive physiotherapy. You also want have some form of stimulation for the person. Make a timetable so that you can fit all you want to do and to manage it without confusion. Decide who will do which task, and at what time, and try to ensure that all the tasks get done without anyone getting too tired.

For example, consider the night rest for the caregivers. Caregivers will burn out without enough sleep, even if everything else is great. Family caregivers will fall ill and break down. The paid caregiver will leave if she doesn’t get enough rest.

.. share the work so that each caregiver gets at least five or six hours of peaceful sleep.

So, share the work so that each caregiver gets at least five or six hours of peaceful sleep. Say one caregiver can sleep off early, maybe by nine, even before the person with dementia does, and this caregiver gets up by about 3 or 4 in the morning, and is rested enough to do what is needed. And the other caregiver can stay up longer, so that she is there with the person who may remain awake till later. This second caregiver sleeps late but she can sleep longer because the first caregiver wakes up early. The person with dementia may have slept for only five hours but somebody has been with them, and both caregivers take turns and get enough sleep.

Proper arrangement and use of space are important. Keep things organized and within reach for the activities you do often. Take diaper change for example. Think of all you need for the procedure, keep it somewhere that you can easily reach and use when you want, so that the diaper change takes the minimum time and effort. Even if you have to do it many times a day, you aren’t thinking, oh no, I just finished cleaning, and now she’s passed motion again and I have to do it all over again.

DCN: Family members need to handle or supervise daily care tasks. Information for these may be available in scattered ways in books and videos and such online resource sites, but they are new to this. What do family caregivers need to learn? Where can they learn it?

Think of all you need to do through the day, see what you know, and ask questions about the rest. Nowadays you can even get someone to come home and train you.

Dr. Hegde: Think of all you need to do through the day, see what you know, and ask questions about the rest. Nowadays you can even get someone to come home and train you. Or you can go to an organization like Nightingales Centre and ask for such training.

And you don’t need to wait to be trained. Keep picking up information as you go along. So, if you are in a hospital, take that opportunity to ask the nurses to show you how some task is done. Or if a nurse or doctor comes home for a visit, or a physiotherapist comes, ask them. Ask things like, how do I check for dehydration, what do you mean by skin elasticity — whatever you think may help. Whatever you have in your mental list, keep picking up whenever you can.

Don’t overwhelm yourself and overdo this. There are many things you may never need to learn because they might not be required for the person you are caring for. This is a process. The person keeps changing so what you need to know also changes. Keep learning what you need. You will see that the more you learn, the easier it becomes for you to modify yourself and learn more. You become better and faster at picking up new things.

DCN: In late-stage care, families have to remain alert about medical problems so that they can call a doctor or rush to a hospital if needed, or cope with minor problems themselves. In any case, they have to share their observations with the doctor when explaining a problem. What can home caregivers learn to help them with this? First aid? Other things?

Dr. Hegde: First aid training is good to have, especially CPR and the Heimlich maneuver. Learn how to check the vitals — pulse, breathing (respiratory rate). And blood pressure, if you have a machine. Understand the difference between slow breathing and rapid breathing.

One important thing to learn is how to ascertain the level of alertness of the person with dementia.

One important thing to learn is how to ascertain the level of alertness of the person with dementia. Check if they open their eyes spontaneously when you call their name, watch for their reactions when you speak and to painful stimuli, to the sounds around them, and so on. Based on these observations, the doctor will be able to ascertain their level of alertness. You can say, yesterday she was opening her eyes when I called her name, today when I’m calling her name there is no response. Yesterday when I pinched her, she withdrew her arm, now today she’s not withdrawing it. She’s not wincing on painful stimuli. This sort of information helps doctors understand the situation better; they can then correct medication levels and decide their course of action.

Being able to detect dehydration is also useful. And you may also need to learn some basic tasks like doing a PR (per rectum) examination or giving an enema.

Of course, you may need to learn other things later, like using a nebulizer or an oxygen tank. You can pick these up as and when they are needed.

Another thing: keep some basic medicines and a first-aid kit handy, along with necessary numbers (doctors, ambulances, persons who may help).

DCN: Which late stage problems can be handled at home and which need a trip to a hospital?

Dr. Hegde: It depends on the sort of problem, the investigation and treatment involved. Obviously for radiation and chemotherapy type of things you need a hospital. But for many things it depends on what you can arrange for at home.

Suppose someone has high fever and has not responded to antibiotics. The doctor may want to check for pneumonia. Can you arrange for a portable X-ray or will the person have to be taken to a hospital for the X-ray? Or for treatment—do you have support to give IV antibiotics at home?

Many services are now available for home-based nursing and medical care, so this depends on which city you are, the cost, distance, and convenience and such things.

Many services are now available for home-based nursing and medical care, so this depends on which city you are, the cost, distance, and convenience and such things. For example, in some places, you can even arrange to do dental work at home. Some home health companies bring a dental chair and clean the tartar and plaque at home. Some even do tooth extraction at home.

DCN: Thank you, Dr. Soumya Hegde, for this basic introduction to setting up the home for late-stage dementia care!

In Part 2, we discuss how to get medical attention, stay in touch with doctors, and cope with deteriorating medical conditions and related decisions.

Note: In this interview series, Dr. Hegde shares information and her suggestions on several topics of late-stage dementia care, for the general convenience of family caregivers. Each family’s care situation is different, and readers will need to see what is helpful for them, and also look at information from other sources. For medical advice for your situation, consult your doctor.

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